Different Kind of Holiday

We're home now, we were discharged Wednesday afternoon. The surgery went well, but this time Dr. Yaun was a little less positive when we left than any other time, which is pretty unsettling. I can tell that she really doesn't know if it will work this time. She was able to go in and break up the membranes with the endoscope successfully, but that is no guarantee that the membranes won't still cause issues or grow back. What she did with the endoscope was actually the less invasive of the two methods. If this doesn't work and the membranes remain an issue, she will have to result to cutting a 2" diameter opening in the top of his skull, removing the bone, and going in to cut the membranes completely out of the ventricle. They replace the skull piece with screws and it will grow back together. Makes me nauseous just thinking about it.

When they do a shunt revision, they always do a CT at 4 am to check the placement and check for any issues. In the past the results have always come back with "thumbs up", but this time when she came in at 6 am to talk to us, she said she wasn't comfortable with what she saw. The catheter had moved from where she placed it in the middle and deep into the ventricle (directly into the pressured cyst that was causing trouble), and it had been pushed to the side against the wall of the ventricle. Of course, she doesn't want to operate again just to replace it until we confirm that it is failing. She said she's seen other kids have catheters in non-ideal places that have worked just fine, but nonetheless, it is in a bad spot and the odds are against us that it will drain properly.

So we're on high alert over the weekend. She initially wanted to keep us another day, which would have had us in the hospital on Thanksgiving, but she said she felt that we had a very good eye for the symptoms and felt comfortable letting us go home, with orders that we'd immediately return if he started getting sick. I'm so happy we aren't there today, I am SO over that hospital! We were supposed to travel to Alabama with all the kids for the holiday weekend. It was a tough call, but I insisted that Bran go on to AL with the kids and I would stay back with Lucas and hope for an uneventful weekend. Bran's family already sees so little of his kids, only about 1-2x a year. The kids have been talking about going for weeks, I just couldn't see disappointing them for this much anticipated trip to see all their aunts, uncles, cousins and grandmother. Not to mention, this is the first time in a few years that all of the Stishers were going to make it in for Thanksgiving.

Nothing right now is a clear-cut symptom, we just have to wait it out. Lucas' eye is still dropping, but that could be from the change/reduction of pressure, or air pockets that get in there from the movement of the endoscope. The air pockets are expected to dissipate in a few days. Last night Lucas threw up his dinner, which has me REALLY worried, but so far today he's kept everything down and his eye looks better today than yesterday. Remember the symptoms are... sunsetting eyes, throwing up, irritability, crying, and excessive sleep. Dr. Yaun said another reason she feels comfortable letting us return home is that Lucas typically shows the same pattern, giving us a few days warning on symptoms before he really bottoms out. She said some kids will start showing symptoms and go down very quickly, from seeming fine, to throwing up, to crying uncontrollably, to not being able to wake them up... all in a matter of 2-3 hours. That's pretty scary. I guess I'm glad we get a more subtle creep on going down that path.

Not exactly the Thanksgiving we had in mind, but if we stay out of the hospital this weekend I'll be ecstatic! That's all I care about right now. I'm grateful to my friends who have extended invitations to Lucas and I to let us crash their family dinners! Even though I've had a number of "its not fair" meltdowns the last couple days, I do have a lot to be thankful for this year... his incredible smile, for one! Happy Thanksgiving to everyone! Go hug your little ones.

PS, check out the songs I added to the sidebar last night, a few that are special to me for Lucas. I've been wanting to get these on here for a long time. The first one will melt your heart, "He's My Son"... I still can't listen to it without crying. Its so fitting to the year we've had. There are a few more I'm trying to add, but I haven't figured out how to get them all into one player.